Please Share Your Comments on Proposed Katie Beckett Waiver

/ August 14, 2019

By Janet Shouse

About the Author

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Janet Shouse is a parent of a young adult with autism, and she is passionate about inclusion, employment of people with disabilities, medical issues related to developmental disabilities, supports and services, public policy, legislative initiatives, advocacy, and the intersection of faith and disability. She wears many hats at the Vanderbilt Kennedy Center, including one as a disability employment specialist for TennesseeWorks.

Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email me at

Most of you have probably heard that the General Assembly this spring passed a law for Tennessee to create what is called a Katie Beckett Waiver. Katie Beckett Waivers allow Medicaid to cover medical services for children in the home, regardless of the parents’ income, in cases where home-based treatment will cost less than or the same as treatment in an institution. (An institution could be a hospital, a nursing home, or an Intermediate Care Facility for Individuals with Intellectual Disabilities.)

The reason I’m writing about the waiver proposal now is the time has come for public comment. You have until Sept. 6 to provide comment.

The law directs TennCare, Tennessee’s Medicaid agency, to request that the federal government (the Centers for Medicare and Medicaid Services) approve this new program for children under 18 who have disabilities or complex medical needs AND who do not currently qualify for Medicaid because their parents earn too much money or they have too much in assets, such as bank accounts or property.

Tennessee will ask to create a two-part program:

  • Part A would be for children who have the most significant medical needs or the most significant disabilities. They would qualify for care in an institution, but their families prefer to care for them at home. Unfortunately, even with really good private insurance, most families in these situations cannot afford the kind of care their children need, and Part A would allow children to get full TennCare (Medicaid) benefits to help pay for the care the private insurance doesn’t cover. These children may also receive home and community based services. Families in Part A may be required to buy private insurance and pay premiums for TennCare on a sliding fee scale to help offset the program’s costs. The legislature provided funding for up to approximately 300 children to be served under Part A. The actual number of children enrolled in Part A will depend on how much services cost for each child in the program.
  • Part B would be for children with disabilities or complex medical needs, but who may not qualify for care in an institution. These children are considered “at risk” of needing institutional care. These children would not be enrolled in TennCare. Their families would receive up to $10,000 a year to help pay for private insurance premiums and services, therapies, etc. that the private insurance doesn’t cover. The Department of Intellectual and Developmental Disabilities would operate Part B. The legislature allotted funding for approximately 2,700 children to be served under Part B.

State lawmakers approved a budget of $27.3 million for the program. When matched with federal Medicaid funds, this means our state will have no more than $72 million to spend on services in this program.

The Centers for Medicare and Medicaid Services could approve both Parts A and B, or just one part, or could ask our state to make changes in order to approve the program.

Here is a PowerPoint presentation that TennCare and DIDD shared in this summer to explain the proposed waiver:

As part of the process, TennCare is required to seek public comment on this “amendment” to our Medicaid plan prior to its submission to the Centers for Medicare and Medicaid Services. Members of the public are invited to offer comments regarding Amendment 40 from Aug. 5, 2019, through Sept. 6, 2019.

If you want to comment on the proposal, you may do so through either of the following options:

Gabe Roberts, Director
Division of TennCare
310 Great Circle Road
Nashville, TN 37243

If you prefer to make your comments in person, you may want to attend one of the following public hearings to comment:

East Tennessee–Knoxville

Location: John T. O’Connor Senior Center, 611 Winona Street, Knoxville, TN

Date: Tuesday, Aug. 20

Time: 1:00 p.m. EDT

West Tennessee–Jackson

Location: STAR Center, 1119 Old Humboldt Road, Jackson, TN

Date: Wednesday, Aug. 21

Time: 1:00 p.m. CDT

Middle Tennessee–Nashville

Location: Bordeaux branch of Nashville Public Library, 4000 Clarksville Pike, Nashville, TN

Date: Thursday, Aug. 22

Time: 2:00 p.m. CDT

Individuals with disabilities or those with limited English proficiency who wish to participate in one of the hearings and who may require language or communication assistance to do so should contact Talley Olson of TennCare’s Office of Civil Rights Compliance by phone at 855- 857-1673 or by email at prior to the date of the hearing.

If you would like to read the entire Amendment 40, you can do so here:

Here is information from the draft proposal that I think you will find interesting:

“The program is the result of a grassroots advocacy effort led by parents who have children with significant disabilities and/or complex medical needs, coordinated by the Tennessee Disability Coalition and others in the disability advocacy community, and championed by state lawmakers who were committed during the 2019 legislative session to prioritizing services for these children and their families within the constraints of a constitutional requirement to balance the State’s budget.

“Included in the program’s goals are to:

  • Help address inequities in Medicaid eligibility between institutionalized children and children with comparable needs who live at home with their families;
  • Provide services in the most integrated setting appropriate in a manner consistent with the Americans with Disabilities Act;
  • Support children with disabilities and complex medical needs to grow and thrive in their homes and communities;
  • Plan and prepare the child for transition to employment and community living with as much independence as possible;
  • Support and empower families caring for a child with disabilities or complex medical needs at home;
  • Provide services these families say they need most to attain financial, physical, and emotional relief;
  • Keep families together, sustain family caregiving;
  • Assist families in purchasing and maintaining private insurance;
  • Help fill gaps between the child’s needs and what private insurance will cover, including
  • essential wraparound services;
  • Delay the need for Medicaid eligibility where possible; and
  • Provide services in the most cost-effective manner possible in order to serve as many children as possible within approved program funding.”

As many of you know, both TennCare and DIDD have sought input from families to help design the program, and I would encourage everyone to look at the proposed amendment or at least the parts that are important to you and share your thoughts. Please don’t feel intimidated! You don’t have to be an expert. Look through the benefits charts. Is this what your family needs? If you have a child older than 18, you could share your thoughts about what would have benefited your child and family during those younger years.

This is one last opportunity to make this program as family-centered as possible. Please take a few minutes to share your views.

As always, if you have a question or concern, please contact me at Thank you for reading. And please share this post if you know families with young children with disabilities.

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